Preparing a Person With Parkinson’s for a Hospital Stay Javascript must be enabled to use this site. Please enable Javascript in your browser and try again. × Search search POPULAR SEARCHES SUGGESTED LINKS Join AARP for just $9 per year when you sign up for a 5-year term. Get instant access to members-only products and hundreds of discounts, a free second membership, and a subscription to AARP the Magazine. Leaving AARP.org Website You are now leaving AARP.org and going to a website that is not operated by AARP. A different privacy policy and terms of service will apply.

Preparing a Person With Parkinson s for a Hospital Stay

Alerting medical staff to the disease and staying on medication is key

Tom Manak and wife Ro attend Rock Steady Boxing, a fitness curriculum for people with Parkinson's disease. Courtesy Tom Manak Andrée Jannette, of West Chester, Pennsylvania, knows the feeling of being in a hospital and desperate to let nurses and doctors know — before anything else — that she has Parkinson's disease. She was diagnosed with the neurodegenerative brain disorder in 2007 and has read the research showing that 3 out of 4 people hospitalized with Parkinson's do not receive medications on time. She's had to be her own advocate in situations such as when a bad fall landed her in the emergency room. Get instant access to members-only products and hundreds of discounts, a free second membership, and a subscription to AARP the Magazine. "Sometimes people will think that you're drunk or have had a stroke or something,” she says of the outward signs of the disease — such as stiffness, tremors and difficulty speaking. That's why she wears a medical ID bracelet and keeps a Parkinson's Foundation Aware in Care hospitalization kit in her purse with extra doses of her medicines and vital information about .

Aware in Care

About 1 million people in the United States have Parkinson's. Neurologist Michael Okun, medical director for the Parkinson's Foundation and chair of neurology at University of Florida Health, says it is the fastest-growing neurological disorder in the world. One of the things that's most troubling for patients, Okun says, is communicating their needs when they're admitted to the hospital. For years, Okun ran the foundation's “Ask the Doctor” forum, and he continues to weigh in on the online forum “,” where he keeps hearing the same stories.
Andrée Jannette with her Aware in Care kit Courtesy Andrée Jannette "One of the common themes is that the nurses, the staff at the hospital, however well-meaning they were, they were not prepared to take care of the Parkinson patient,” he says. “They didn't have appreciation for the importance of getting medicines on time, every time. They didn't have appreciation that certain commonly used medications in hospitals can actually harm a person with Parkinson's” because of potential complications. Parkinson's Foundation research shows that 2 out of 3 people with Parkinson's experience unnecessary complications related to not getting their medications on time when hospitalized. These includes falls, confusion and longer hospital stays. .” Since 2011, the Parkinson's Foundation has distributed more than 100,000 free kits that include a Parkinson's disease ID bracelet, a medic alert card, medication forms to fill out and fact sheets with information on the disease for caregiving teams. Entertainment $3 off popcorn and soft drink combos See more Entertainment offers > The kit has brought results. According to the Parkinson's Foundation, 80 percent of kit users felt comfortable educating hospital staff about their Parkinson's needs, and they were twice as likely to receive their medications on time.

A practical tool

Tom Manak, in Glen Ellyn, Illinois, keeps everything in his hospitalization kit, including medications in their original bottles and cellphone numbers for doctors. He is the full-time caregiver for his wife, Ro, who was diagnosed with Parkinson's 30 years ago. "She's really what you'd call a complex patient,” Manak says. She's had complications from that caused a hemorrhagic stroke. She's dealt with a major staph infection, is in a wheelchair and has started to develop dementia. Manak blends her medicines into lemonade or iced tea that Ro gets every hour. He knows that if Ro has an unexpected hospital visit, her specific medications are not in the typical pharmacy formulary. So he brings her doses with him when he can. "If a Parkinson's patient isn't getting their meds on time, depending on the symptoms they're treating, their actions or ability to move may be limited,” he says. “So now, the nurse may be looking at them and think there's something else wrong, or they're not recovering properly or anything else, so length of stay can go up. And the last place you want to be is in a hospital at a time you don't have to — even before COVID-19." Manak says his career in nonclinical health care administration has given him a leg up in communicating with clinicians. AARP NEWSLETTERS %{ newsLetterPromoText }% %{ description }% Subscribe MORE FROM AARP AARP NEWSLETTERS %{ newsLetterPromoText }% %{ description }% Subscribe AARP VALUE & MEMBER BENEFITS See more Health & Wellness offers > See more Flights & Vacation Packages offers > See more Finances offers > See more Health & Wellness offers > SAVE MONEY WITH THESE LIMITED-TIME OFFERS